The Impact of COVID Vaccination on Symptoms of Long COVID. An International Survey of People with Lived Experience of Long COVID

Long COVID is a multi-system syndrome following SARS-COV-2 infection with persistent symptoms of at least 4 weeks, and frequently for several months. It has been suggested that there may be an autoimmune component.  There has been an understandable caution amongst those experiencing long COVID given the potential impact of vaccination on boosting immune response. We aimed to survey people living with Long COVID evaluating the impact of their first dose vaccination on their symptoms.  Methods: Patients with Long COVID were invited to complete a web-based questionnaire through postings on social media and direct mailing from support groups. Basic demographics, range and severity of Long COVID symptoms, which vaccine received and impact of vaccine were collated. Results: 900 people participated in the questionnaire, of whom 45 had pre-existing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) but no evidence of COVID infection and a further 43 did not complete the survey in full. The demographics and symptomology of the remaining 812 people were similar to Office of National Statistics. Following vaccination, 57.9% of participants reported improvements in symptoms, 17.9% reported deterioration and the remainder no change. There was considerable individual variation in responses. Larger improvements in symptom severity scores were seen in those receiving the mRNA vaccines compared to adenoviral vector vaccines.  Conclusions. Our survey suggests COVID-19 vaccination may improve long COVID patients on average. The observational nature of the survey limits drawing direct causal inference, but demands validation with a randomised controlled trial. Funding: No funding was provided for this survey. Declaration of Interest: No authors report any competing interests relevant to this manuscript. Ethical Approval: This survey of a patient group’s contacts, independent of the NHS did not require HRA/Ethics approval